Artificial Nutrition and Hydration

Artificial Nutrition and Hydration SUMMARY GUIDANCE In May 2007 The National Council for Palliative Care (NCPC) and the Association for Palliative Medicine published Artificial Nutrition & Hydration: Guidance in End of Life Care for Adults. This is a summary of that Guidance. It identifies some of the practical, legal and ethical issues that may arise when artificial nutrition and hydration is being considered and contains two illustrative case studies. It also includes some suggested approaches to opening up discussion about these important issues. This document is intended to help health and social care staff in all settings, for example, care homes, community hospitals, hospitals and hospices. It is intended to act as an introduction to this subject but it is strongly recommended that you also refer to the full version of the Guidance. Details about how to obtain it can be found at www.ncpc.org.uk. This publication anticipates the Mental Capacity Act (2005), which is legally binding from 2007. Practice should take account of the Act. Details about NCPC s Guidance on the Mental Capacity Act can be found at www.ncpc.org.uk.

THE EXECUTIVE SUMMARY Artificial nutrition and hydration (ANH) has the potential to prolong life, and improve general well-being. For some patients with life threatening illnesses this may be advantageous even if the underlying disease process continues to deteriorate. However, in some circumstances, giving ANH will only prolong the period of suffering. As ANH is regarded legally as a medical treatment, a clinician should only offer it if he/she thinks it is in the patient s best interests. In addition, a clinician cannot be compelled to prescribe ANH if he/she does not believe it to be in the patient s best interests. A blanket policy of artificial nutrition or hydration, or of no artificial nutrition or hydration, is ethically indefensible and, in the case of patients lacking capacity, prohibited under the Mental Capacity Act (2005). Artificial nutrition may prolong survival in cancer patients who have difficulty swallowing due to a local cause e.g. obstructing tumours such as throat cancers. However, for patients with cancer cachexia or those with other conditions near to death, there is no evidence that artificial nutrition lengthens survival or improves quality of life. Artificial hydration is unlikely to influence survival for patients with advanced cancer and those with other conditions who are near to death. However, it may have a limited place, on a trial basis, in treating those who have thirst who are near to death but still conscious or semi-conscious. It is important to note, however, that dry mouth for such patients is often caused by mouth breathing and medication, and this will not be helped by artificial hydration. Good mouth care is more appropriate in this situation. Also for these patients, parenteral (given via a drip) fluids have the potential to exacerbate oedema (swelling) and increase transudates (leakage) in other body spaces. Some advanced neurological conditions may compromise the ability to swallow, for example motor neurone disease. Patients with these conditions should be helped to discuss whether they wish ANH before they become unable to swallow, by being given the full information regarding risks and benefits. This should be a part of the advance care planning process for all such patients. Where swallowing is unlikely to be compromised even towards the end of life, for example for people with heart failure or advanced respiratory disease, then decisions about ANH may not arise. However the ability to swallow can be reduced for patients with other conditions such as advanced dementia or stroke. As with cancer, the potential benefits and burdens of ANH for such patients need to be carefully assessed on an individual basis. In assessing whether to give ANH, each case needs to be individually assessed to determine what is in that person s best interests. This applies to all forms of ANH however it is administered. Best interests decisions will include an assessment of the benefits and burdens of ANH to the patient. The following stepped approach is proposed when deciding whether to give ANH: 2

1 2 3 4 5 Assess whether the patient has capacity to consent or refuse to have ANH. Patients with capacity should be helped to participate in discussions if ANH is being considered. Patients with capacity can refuse ANH even if the doctor foresees significant benefits. If the patient does not have capacity, find out if there is an Advance Decision refusing ANH. This will be legally binding, providing it meets conditions specified in the Mental Capacity Act. Some patients will have appointed someone with Lasting Power of Attorney (LPA) who may be entitled to consent to or refuse ANH on the patient s behalf, if the patient had specified this. A Court Appointed Deputy (CAD) may have been appointed by the Court of Protection to make some decisions on behalf of the patient. Although CADs cannot make decisions about life-sustaining treatment, their views about where the patient s best interests lie should still be taken into account. Advance Decisions, LPAs and CADs will only come into effect if it has been determined that the patient does not have capacity to make the decision in question. If none of the above applies and if the patient does not have any family, friends or informal carers who can offer an opinion as to the patient s best interests, then an Independent Mental Capacity Advocate (IMCA) might need to be consulted. The IMCA is a new advocate whose duty is to ascertain and represent the patient s best interests. The IMCA is not responsible for the final decision made but will have input to it. Who is responsible? If the patient does not have capacity, and has not made a valid Advance Decision or Lasting Power of Attorney, the person legally responsible for the decision is the person implementing the decision to give/withdraw ANH. In practice this will most often be: the general practitioner if the patient is in the community or care home. the consultant or other named doctor responsible for the patient, if in hospital or hospice. Best practice would be for such decisions to be made with input from the multi-professional team. Weigh up possible benefits and risks of ANH. Potential benefits may include prolonging life, and improving quality of life. Artificial hydration may relieve thirst, but hunger is uncommon anyway in those who have not eaten for some time. Potential risks include those associated with having tubes inserted, and the potential complications thereafter. If the illness is causing suffering, prolonging life may not be helpful, especially if the underlying disease continues to deteriorate. In assessing whether to give or continue ANH, each case needs to be individually assessed to determine what is in that individual s best interests. What is in the patient s best interests if he/she lacks capacity? From 2007, best interests are governed by the Mental Capacity Act. The Act sets out a specific process which must be applied when assessing best interests. (i) Be non-discriminatory. (ii) Consider all the relevant circumstances. (iii) So far as reasonably practicable, permit and encourage the patient to participate, or improve his/her ability to participate in the decision whether to have ANH. (iv) Consider, so far as is reasonably ascertainable, what the patient s views might have been. It may be that the patient has made an Advance Statement that, despite not meeting the Act s strict criteria for a legally binding Advance Decision, may still contain evidence of the patient s wishes, beliefs and values relevant to ANH which should be taken into account. (v) Take account, if practicable, of the views of those close to the patient as to what would be in the patient s best interests. This would include anyone the patient has named to be consulted, and anyone engaged in caring for the patient, or interested in his/her welfare. If there is no-one to be consulted then an IMCA may be needed as described above. In assessing whether to give ANH, each case needs to be individually assessed to determine what is in that person s best interests. This applies to all forms of ANH however it is administered. Best interests decisions will include an assessment of the benefits and burdens of ANH to the patient. These decisions must not be motivated by a desire to bring about the patient s death.

SOME FREQUENTLY ASKED QUESTIONS Is there a difference between the fitting of a feeding tube and the passing of food and fluids down it? No distinction should be made, ethically or legally, between withholding feeding tube insertion in the first place, and withdrawal of feeding through the feeding tube.1,4 In other words food and fluid passed through a feeding tube is considered medical treatment along with the insertion of the tube itself. For a patient who is already established on PEG (percutaneous endoscopic gastronomy a feeding tube passed through the abdominal wall into the stomach) feeding it is usually appropriate to have a frank discussion with the patient if he/she has capacity as to if, or in what circumstances, feeding will be withdrawn. If the patient lacks capacity, it is necessary to try to determine what is in the patient s best interests. This should take into account the views of those interested in the welfare of the patient (under the Mental Capacity Act) as to where the patient s best interests lie. Thus, an appropriate agreement might be to continue feeding through the tube until death is thought to be imminent in the following few days. In practice, it might prove to be in the patient s best interests to reduce the volume of nutritional fluid being passed through the feeding tube as patients who are near to death often become unable to tolerate the same volume. It might also be agreed that fluids will be continued until the patient loses consciousness prior to death. Again, this would have to be in the patient s best interests as there are associated risks including swelling and leakage. Do imminently dying patients suffer hunger and thirst without ANH? High quality evidence in this area is limited and chiefly focuses on people with cancer but it is important to note that experience in palliative care suggests that most imminently dying patients die peacefully and comfortably without artificial fluids. In particular, thirst or dry mouth in people who are terminally ill may frequently be caused by medication, when artificial hydration is unlikely to help. Good mouth care and sensible prescribing is more important. However, for patients who are conscious or semi-conscious and complaining of thirst, it may be beneficial to give a trial of parenteral fluids to see if this helps. Some patients may suffer confusion and agitation as part of the dying process. Associated agitation can be treated pharmacologically as appropriate. Appropriate palliative care includes artificial hydration where dehydration results from a potentially correctable cause (e.g. overtreatment with diuretics and sedation, recurrent vomiting, diarrhoea, hypercalcaemia, and infection). Patients with advanced cancer often have diminished hunger as part of the cancer cachexia syndrome. Moreover, as a patient with cancer nears death, the desire for food and drink lessens. It is generally accepted that hunger is not a significant factor in patients who are imminently dying. How should mental capacity be assessed? The Mental Capacity Act contains a prescriptive test to determine whether a patient has the capacity to make a particular decision. The person must have impaired function of the mind or brain, as a result of which he must be unable to do at least one of the following: understand the information about ANH (which must be explained in a manner which can realistically be understood, such as via an interpreter) retain that information (even if only for a short period) use or weigh that information communicate the decision (by any means) It is important to note that people have the right to make decisions which may seem eccentric or unwise to other people and that this in itself is not evidence that they lack capacity. We are all entitled to make our own choices without our capacity being called into question. There may be instances in certain complex cases when determining capacity is difficult. In this situation it would be appropriate to seek a second opinion and/or refer for a psychiatric or psychological opinion. Where there is a serious dispute over whether a patient has capacity legal advice should be sought over the need to consult the Court of Protection. 4

CASE STUDY A A patient with a neurological condition who has capacity to make decisions about ANH Mrs B, age 42, was diagnosed with MND (motor neurone disease) just over a year ago. She has found it very distressing to talk about her illness, and appears to be frightened about how the disease will affect her in the future. She is wheelchair-bound, and now requires to be hoisted at home. Her speech is becoming difficult to understand. She may be depressed but her capacity is not impaired. Because of her MND, she already has one bulbar symptom (dysarthria - difficulty in articulation of speech) and will be at risk of developing dysphagia (difficulty in swallowing). The duty of care entails acting in the patient s best interests. Since Mrs B has capacity, she knows what those interests are and we are obliged to make every effort to maintain and promote that capacity and know her views. There are key questions looming for Mrs B to consider. If she is going to lose the ability to speak, and by definition, the ability to articulate her wishes clearly, then there is a need to pursue these discussions urgently. She may still be able to communicate by other means in the future, including writing, and by using electronic communication devices. However, for many people, it becomes more difficult to articulate one s wishes on such a sensitive and difficult issue such as ANH, without the faculty of normal speech. There are two future treatment decisions to consider here, either of which she could be faced with unexpectedly soon: i. Artificial nutrition and hydration. There is a need to discuss how long meals are taking and whether she is having any choking episodes. In MND, fitting a gastrostomy tube may be associated with improved symptom control, usually as a result of restoring normal nutritional requirements and regaining weight. It may also be life-prolonging. Results are better if the feeding tube is fitted early, especially before respiratory function is compromised, and not waiting till swallowing is lost. ii. The need to consider other means of communication if her speech becomes less intelligible. Mrs B is frightened of the future, and will not typically initiate discussions about lifeprolonging treatment options. Discussing the future with her now may allow her to determine ahead of time what will happen to her should she be unable to communicate (See Table on page 7). It is not uncommon for someone with MND to be admitted as an emergency, where decisions are taken by a doctor who has never had the opportunity to communicate with her when she could still speak. Hearing her wishes about ANH may help to return control to her. Guiding her in what to expect either way may empower her to make the right decision for herself. Further guidance about this type of advance care planning can be found in Advanced Care Planning: A Guide for Health and Social Care Staff published by the NHS End of Life Care Programme, and available to download via NCPC s website. However, best practice should dictate that the medical team must not put pressure on a patient to make an Advance Decision. Putting pressure on patients to make any form of advance decision would reasonably be considered to be coercive, which then casts doubt on the validity of any decision made. 5

CASE STUDY B A patient imminently dying, without capacity to make ANH decisions Mrs J is 83, and has had pancreatic cancer for nine months. She has lost three stone in weight, and for the last two weeks she has been bed-bound. It had been her wish to die at home, and it is with a sense of guilt that her husband has finally accepted that he can no longer manage her at home. Confusion and agitation necessitated admission to the local hospice. Looking for reversible causes for this delirium, hospice staff found no evidence of infection, and routine biochemistry tests including bilirubin, calcium, urea and creatinine were all relatively normal. Over the next few days she became increasingly drowsy, but more settled with a minimal dose of Midazolam (10mg per 24 hours) in a syringe driver. During one lucid period, she intimated that she had no pain, and was not hungry, but she was nevertheless thirsty. She agreed to have a subcutaneous infusion of normal saline at a rate of 500mls overnight. Her thirst was better after the first night, but later that day she became unrousable. The infusion of saline was continued for only one more night to see if she might regain consciousness (and therefore experience thirst again). Two nights later, Mrs J was deeply unrousable and appeared to be dying without any distress. Her husband was angry that the subcutaneous fluids had been stopped, and demanded that they be restarted, saying, While there s life, there s still hope. What decisions need to be made about Mrs J s care and treatment? The Mental Capacity Act sets out the specific process that must be applied when assessing a person s best interests. Does the patient have capacity? No, she is unconscious and therefore does not have capacity. Furthermore, she does not have an Advance Decision, Advance Statement, Lasting Power of Attorney, or Court Appointed Deputy. Therefore the responsibility for the decision lies with the clinician responsible, in this case the consultant, whose judgment must be made in Mrs J s best interests. How should Mrs J s best interests be assessed? The Mental Capacity Act sets out the specific process that must be applied when assessing a person s best interests see the section following this case study for further discussion. In Mrs J s case key points to consider are whether ANH will prolong life or affect comfort and what Mrs J s views or wishes might have been. Will ANH prolong life? This woman s malignancy has progressed gradually but relentlessly over months, and there is no outstanding potentially reversible cause for her deterioration. In this context, therefore, giving ANH will not prolong her life. In the last few days of life in a malignant illness, there is a tendency to develop peripheral and pulmonary oedema because of low serum albumin and leakage through the vascular endothelium. Administering parenteral fluids may exacerbate this. Will artificial hydration relieve thirst? There is evidence that cancer patients experience diminished sensation of thirst in the last few days of life, before they lose consciousness. It is generally assumed that the more deeply unconscious a patient is, the less they are aware of any bodily sensations, including thirst. It has to be recognised that patients who wake up perhaps for short periods only three or four times a day, may still experience thirst during these times. It is the responsibility of staff to assess thirst repeatedly. Can Mr. J demand treatment for his wife? Listen carefully to Mr. J s concern. Under the Mental Capacity Act, he must be consulted in order to identify his view of his wife s best interests. He may be an excellent advocate for his wife, and he is responding to this situation with his own lifetime s experiences and beliefs. It could be that he is struggling with the reality of losing his wife, and feels the need to do something. He may feel that he has not been adequately heard and that his views were not considered in other contacts with clinical staff.

CASE STUDY B Staff need to explain that the motive for giving a drip was to relieve the distress of thirst, and that it could not prolong her life. It is important to provide assurance that the hospice team wants to relieve any distress the patient may have. Share his concern that she should not be thirsty. Note: Good palliative care recognises the need to act with compassion not only towards the patient but to loved ones too. Administration of parenteral fluids is a common source of anxiety for families of dying patients. Any practice of negotiating a compromise with family members, where the clinician seeks to do no harm to the patient but agrees to give parenteral fluid for a limited time, should be reviewed carefully. There might be some justification in this if one believes that a family s distress is contributing to the patient s suffering. However, the Mental Capacity Act makes it very clear that your decision will be lawful only if it is in the patient s best interests. Some suggested ways of initiating conversations on life-prolonging treatments and ANH Do you have any questions about your illness at present? Has it been useful to get information about this illness? Would it be helpful to talk about how this illness may go in the future? There are some things I want to ask your guidance about. Does it seem comfortable talking about these things? I wonder if I could ask your thoughts about something important. I wonder if you have ever thought what you might like to see happen if Sometimes people with your illness find that it becomes more difficult to swallow.(allow response). Does it surprise you to hear that? There are a number of ways we can help with this. Would it be helpful to talk through some of your choices? Can I ask you, does it seem comfortable talking about these things? (This is an important type of question to ask, and may be used throughout the discussion or discussions. A negative reply should be respected.) For patients with capacity to give informed consent to accept or refuse ANH, the discussion will involve looking at a number of possible issues: the procedure required (e.g. fitting PEG tube) before ANH can be given the possible benefits, risks and burdens of the proposed ANH the likely course of the underlying disease discussion if indicated in what circumstances ANH might subsequently be stopped the likely course of events if ANH is foregone. In any event, patients must not be coerced into making any decisions that will affect their future management. 7

Links to further information The following publications are available for purchase (or to download free of charge by NCPC subscribers) at NCPC s website: www.ncpc.org.uk Artificial Nutrition & Hydration: Guidance in End of Life Care for Adults Guidance on the Mental Capacity Act 2005 Advanced Care Planning: A Guide for Health and Social Care Staff (download free to all) For information on the implementation of the Mental Capacity Act and the final version of the Code of Practice see: www.dca.gov.uk/capacity www.dh.gov.uk Other sources of information on assessing capacity: www.bma.org.uk enter Ethics, section on consent and capacity BMA and Law Society (2004) Assessment of Mental Capacity: Guidance for Doctors and Lawyers, BMJ Books. With thanks to Simon Chapman, Lucy Sutton, Eve Richardson from the National Council for Palliative Care And to Dr Colin Campbell and Dr Richard Partridge, authors of the original Guidance The National Council for Palliative Care (NCPC) is the umbrella organisation for all those who are involved in providing, commissioning and using palliative care and hospice services in England, Wales & Northern Ireland. NCPC promotes the extension and improvement of palliative care services for all people with life-threatening and life-limiting conditions. NCPC promotes palliative care in health and social care settings across all sectors to government, national and local policy makers. ISBN: 978-1-898915-54-6 The National Council for Palliative Care The Fitzpatrick Building, 188-194 York Way, London, N7 9AS Tel: 020 7697 1520, Fax: 020 7697 1530 E-mail: enquiries@ncpc.org.uk Website: www.ncpc.org.uk 8 8 (free to all NCPC subscribers)